ApoE4.Info

I haven't checked in with this website in quite sometime, because I tend to get obsessive and dwell on my 4/4ness. Been doing ok and having fun ignoring my AD chances. However, I could use a little advice. I have volunteered in a two part study. The first part is genetic testing and disclosure of APOE status. Genetic counseling and information about APOE will be disclosed in this study. To the point, they are looking for 4/4s, and are happy that they already have me and that I have calmed down about my status. Part 2 means that I would receive CAD106 or a placebo. I have a 5 in 8 chance of getting the CAD106. I would get an injection every 13 weeks. The duration of the study will be 5-8 years. The CAD106 acts as a vaccine and is being tested to see if it helps remove the plagues of amyloid that develop in the people who later develop the symptoms of AD. I am not supposed to directly benefit from participating from this study, but it might help others down the road. I have to have MRIs, and don't know if I can handle that shut-in feeling. Willing to try to tune out. Lots of memory and thinking tests. Also have to have a study partner. The whole thing sounds stressful and time consuming, but I am in. Want to be proactive.

Nice to see you posting, {{{lol.}}} It looks like you're participating in the API Generations Study done in conjunction with Banner & the NIH? Huge thanks for offering to be a lab rat, my friend. Have you ever done an MRI before? I've had many. Aside from being noisy, they're very relaxing. You can just close your eyes, go to your happy place, and meditate. Unless you have major claustrophobia, you should be fine. Please check in let us know how it all goes. XO

Yes, that is the study I am participating in.

Lol,
Thank you for participating in the trial. Just in case you haven't had an MRI, I have had MRIs and they aren't bad. I close my eyes for shots, infusions and MRIs. What I don't see won't bother me. They give you soft stuff to put in your ears and then big protective ear covers like they people working on the ground at air port landing fields wear. You get a buzzer so you can signal at any time if you have a problem. Let us know how it goes.
Starfish

I tried to post under the API Generation Study info that you posted a while back, Julie, but I can't find it. I did read it, and it was more alarming than the material presented to me at my study site, University of PA.

Any way, to update:

Had my first visit and there were some memory and cognitive tests. Pretty basic. No problem. Lots and lots of psychological, lifestyle questions. The meaning of APOE was drilled in - over and over and over. First, I read about it. Then, I saw a slide presentation. Then I got tested on my understanding of the different categories of APOE. Of course, I already know that I am 4/4, but I am getting treated like everyone else. After that, a psychologist/counselor had a long discussion with me, making certain that I understood the ramifications of getting my results. Then, concern for my mental state and perhaps the chance to participate in the second part of the study, where I would get CAD106 or placebo. After I got home, there were many follow up calls. Am I okay? Depressed? That kind of thing. It was fair for people not know their APOE status.

Second visit was exhausting, all day long. This time, there were extensive memory and cognitive tests. Plus, my vitals, including blood draw (didn't pass out!), blood pressure, EKG, weight, height, urine sample (checking for drugs), another cheek swab, and MRI. Handled the MRI, primarily because I could get classical music, specifically piano, and some kind of sedative - which I asked for. My local doctor forwarded my medical records. Lots of state of mind testing - suicidal? depressed? hopeless? Life style questions: exercise, diet, etc.

One problem is that I don't sleep. My mother recently died and my grandson was in the hospital for 11 days. And now I have to think about being 4/4 again. The medical doctor involved in the study also called with questions. Had to give them a list of all vitamins and drugs that I am taking. He ruled out all of the PMs because the antihistamine leads to confusion. They help me sleep, so he caved in and I can take them, but not on test days.

So, all of the above tests have to be ok. Then I go back for a PET scan, about the amyloid plaque and whatever else - probably more memory and cognitive tests.

Oh - They are getting people for this study from Gene Match, which I enrolled in. U of Penn is going to have 10 people. Gene Match also called to make sure everything was going ok and did I have any problems with anything?

What do I think? The U Penn staff is extremely professional, organized, and really nice. I trust them to look out for me. I am glad to be part of the study. If I am qualified to continue and get the CAD106 and not the placebo, I am certain they will be glad for the information that I can provide but they will also have my best interests.

Keep you posted. Good weekend everyone.

Couple more things. My husband is my study partner and now I know a little more about that. They take him off and ask him questions - what did you do last weekend? What was the date? And other stuff. Then they ask me. Guess are answers should match up. I am more detail oriented, so hopefully he gets his answers right.


The cognitive and memory questions are fair. If you have an auditory or visual style of learning, or even drawing - they have some of everything. Think after they figure out a person is in the normal range cognitively, they must be trying to find a baseline for memory and cognitive skills. Over the years, there will be continuing testing. Declining? Not get any worse? Could it be the CAD106 that a person might be taking? Lots of researchers are involved and it seems they are using data for many things.

All right. Over and out. Enough.

Thanks lol (& your supportive hubby) for volunteering to be study subject. Keep us updated and motivated to someday volunteer similarly.

Here's the original post about the study. Sorry if anything there alarmed you- never our intention.

Congrats, lol, on getting so far into the process! I know you were worried about the MRI. That's too funny about your hubby. I also think my cognition is superior to my hubs. I feel you there... but then no one's checking us. We're all so grateful to you for participating. Keep us posted. XO

Should have done some proofreading. Our answers should match up, not "are". That would definitely be one wrong in a cognitive test. Can't be too careful. Thanks for your support, Julie!

I'm impressed by you lol. Thanks for what you're doing for apoe4 humankind